New Member Here

[Guest guest]

Hi Chelle,<br>Glad you found this club, it is

really a great one. Sorry the other was to slow....that

is a by product of being very hypo <br><br>Also

glad you found a doc who listens. That is the biggest

battle, finding an intelligent and empathetic

doctor.<br><br>Best of health,<br>Bev

[Guest guest]

HI Chelle, I am a hypothyroid by birth also. I

have a gland but it just doesnt work properly...and

have dealt with it since birth also...Im on .150mcg

but I just took a new lab friday and am waitin for

results of that to see if they will bump me up or

not.frankly I think they probably will. but we'll see...well

it sure makes for hard time tryin to lose

weight..anyways..if you would like to chat.You can email me at

candiebearc@... and I will send ya my chat ids .. God

bless,Cherie<br>God bless America

[Guest guest]

Hi Cherie, Nice to see another Texan here! :-)

Yes, losing weight IS awfully hard if you're hypo and

your thyroid meds aren't strong enough. I was on the

same dose you're on up until a week ago, and let me

tell you -- I truly hope and pray your doc puts you on

175 mcg, or at least lets you alternate between 150

and 175. The difference between being on 150 and

being on 175 is like NIGHT and DAY. I have more energy

and stamina now, my nails and hair aren't as brittle,

and I think I actually feel a bit lighter already. My

previous Doc back in California put me on 175 for only a

month, and after seeing my TSH level drop just a little

below the normal range he put me back on the lower

dose. I was bummed, to say the least, but I didn't

really think I could do anything about it. We were in an

HMO at the time (through my husband's employer), and

I believe the doctors would rather do what the HMO

administrators wanted than what was really in my best interests.

Now we're in a PPO, and I think the doctors have more

freedom to think and make decisions. If I have any say in

the matter, I will NEVER join an HMO again. It's the

closest thing to socialized medicine in this

country.<br><br>Anyway, thank you for your e-mail addy. I hope to chat

with you soon. :-)<br><br>God bless,<br>Chelle

[Guest guest]

A lot of people would kill to have numbers like

yours. It sounds like your doctor is a keeper. A lot of

people don't sweat at all with thyroid problems, so this

is why your doc thinks it is good. Your body temp is

back to normal, so you sweat instead of being cold all

the time. Some people do great on synthroid. If you

are doing as good as it sounds, I wouldn't change a

thing.<br>Weight loss is a struggle with thyroid problems, but

then losing weight is a struggle without thyroid

problems. A lot of times the real problem with thyroid

problems, is keeping from gaining even on a good diet and

exercise program. If your numbers are in such an optimal

range, you can hopefully lose weight and it sounds like

you are having some success and are on the right

track.<br>I am on double the amount of unithroid as I was on

with synthroid, so I wonder if part of my problem with

synthroid was I didn't know enough at that time to question

my doctors knowledge on the subject. Once I got mad

and said " I don't care what the TSH test says, I

don't feel good " , then he finally took my complaints

seriously and that is part of why I am switching doctors,

because I had to get mad to get him to take my compaints

seriously. Long story!<br>I had to pretty much diagnose my

own thyroid problem after gaining a ridiculous amount

of weight while my doctor just kept telling me to

diet and exercise.<br>Vitamins C, A, E, thiamin(B1),

riboflavin(B2), & copper all help aid in iron absorption. This is

another problem I have that my doctor told me wasn't

related to my thyroid. Also B6 & B12 help prevent anemia.

Get yourself a good nutritional healing book, so you

are eating a good healthy diet. Unfortunately the

some of the best sources of iron are also higher in

fat and spinach, IRONICALLY enough (excuse the pun, I

couldn't resist), while high in iron, has a chemical

called oxalic acid in it which blocks absorption of

iron. Eat lots of beans and green leafy vegetables (the

darker the better), also shellfish is a source of iron.

Read labels as you go grocery shopping.<br>One of the

best things for losing weight and helping get rid of

edema is to drink as much water as you can possibly

stand to drink, it gets rid of lots of toxins and if

you are a little dehydrated, your body will cling to

fluids because it thinks you are going to die of

dehydration and when you flood your system with lots of

water, it will finally let go of the fluids it was

trying to hang onto. The more you weigh, the more water

you should drink because the water has more tissue to

saturate. I've read that you should drink half of your

weight in oz. of water or 64 oz. whichever is more.

Example: if you weigh 300 lbs, you should drink 150 oz

water a day. Anything with caffiene doesn't count

toward your water goal and actually should be counted as

a negative balance when counting up your water

consumption. Keep exercising because this is also helping with

the edema and all other body functions too. <br>There

is a really good book called " Prescription for

Nutritional Healing " by Balch & Balch. I think that's correct

or at least close. (I have it here somewhere.) you

can look things up by the vitamin or by the disease

and it really helps you with diet to aid in problems

with health. You cam find it in any good book store.

Best of luck! Bee

[Guest guest]

Bee thanks for all the info. I really like my dr.

Before I never saw the dr, saw either a PA if I was

lucky but usually just a nurse. when insurance switched

and we have to now pay part of the visit, I said

forget it. I was not about to pay the same amount to see

a nurse! So my mom found this dr who was fresh out

of med school, he must be just right around 30 and

boy is he cute! I'm glad that I switched because

he is the one who insisted that I needed all the

bloodwork. I have difficult veins so I normally tried to get

out of bloodtests.<br><br>See I thought that I was

supposed to be cold all the time but I've never been a

cold person. Maybe it just had something to do with

all that extra insulation that I carry around with

me. I can see that the sweating is good for you but I

must say that I like it better not sweating!<br><br>I

do think that all the exercise I've added has really

helped. My fitness class is actually my favorite class

now. I feel a lot better when I go work out a few

times a week. It's just said to see the weight coming

off soooo slowly. One neat thing is we do a body fat

analysis at the beginning and at the end of the semester.

Hopefully I will really see some changes there because I do

a nice amount of weight lifting. I've also already

got the go ahead with the instructor to continue my

program for next semester.<br><br>Ironically, I love it!

Vitamins are really a problem with me. I think that I

really should take a daily supplement because I'm not

getting those things from food. With the IBS, a lot of

things that are good for you give me stomach aches

something awful. I've been slowly trying to add them in. I

just recently started Oj again. And I've been trying

to eat broccoli a few times a week (one of the

vegetables that I actually like) and eat more apples. I

generally eat meat mostly on the weekends at my fiance's

house. I live in the dorms at school and having meat is

really sort of a pain to do. <br>Is the anemia related

to the thyroid? I'm not a person to generally lose a

lot of blood. But I do have a family history of

anemia, my uncle had a LOT of problems with it when he

was younger.<br><br>Drinking a lot of water is one

thing that I do right. With the IBS water is about all

I'm really supposed to be drinking. Juice is a big

nono and so is soda. Although when I'm at my fiances

house on the weekends, I do usually drink a few cans of

pop. But I also drink about 4-5 liters a day.

<br><br>Janine

[Guest guest]

Dear Marie,

PLEASE cancel your appointment, and buy yourself some time to explore other options. I was diagnosed with Graves hyperthyroidism 5 years ago, and after taking meds. and changing some supplements and foods, I recovered in a few months, and have been fine ever since. There are lots of options, and everyone I know of who took RAI has been sick ever since--it is not a cure, and I believe the effects are worse than those of the original illness.

Look into this carefully--once you destroy your thyroid with RAI, you can NEVER GET IT BACK. Try less drastic measures--they work.

Good luck,

AntJoan

[Guest guest]

Hi Marie,

Welcome.

I am sure you have many questions, and you are very right to be asking them.

Many of us have refused to take the RAI and have tried the least invasive

treatment option

first, which is taking anti thyroid drugs.

Others, that are not in very serious conditions, have done well with herbs and

supplements, but this MUST be very closely monitored with blood work. I believe

the

severity of you condition will make a difference between the vitamin route,or

anti thyroid

drugs.

Personally I have done my best using a combination of the two.

I am now not needing to take the pills anymore, and am continuing with my diet

and

supplements, and getting blood work done every month, to keep a close eye on

things.

Once you get to looking around, and reading, you are going to find many disagree

the RAI

is safe at all ! You do not have to do it, just because they have scheduled it.

You may

ask to try the drugs, or you may just find a new doctor.

This list can be very quite, and you need lots of info now... so here are links

to busy

places, with lots of posts already there, for you to read. :-)

http://www.mediboard.com/cgi-local/ubbcgi/ultimatebb.cgi?ubb=forum & f=1 & DaysPrune\

=

http://forums.about.com/ab-thyroid2/start/

See ya there :-)

-Pam- also know as almostcrazy

( boy, it seems like a long time ago I picked that name ) LOL

[Guest guest]

Thank you Pam. You were helpfull. You sound just like my Aunt (retired

teaching nurse) who I called has soon I got home from the encro. I am trying

to find a new dr. since I really don't care for this one.But it seem they

all don't have openings for a couple of months. I just ask my husband and he

even said that the enco didn't even mention that it could cost worsening of

the eyes or even can cause cancer. I am going to check out the links. I'm

trying to find out all the information I can before Monday at 12. I have up

to that time to cancel the RAI.

Marie

[Guest guest]

Hi Marie,

There really is no rush to have treatment, especially aggressive treatment, so soon. Your doc can give you beta blockers to reduce your cardiac symptoms. And today most doctors first bring your thyroid hormone levels down with anti-thyroid drugs before even considering doing RAI since it temporarily worsens symptoms. I can't imagine why your doctor said RAI was the safest option. It is, though, the cheapest option and that makes insurance companies happy.

Having had RAI 12 years ago and considering it the worst decision I ever made, I'd suggest you study your other treatment options carefully and learn more about Graves' disease. GD is an autoimmune disorder caused by an immune system defect. GD eventually resolves, and there are drugs you can use to lower your thyroid hormone levels until that time. Destroying your thyroid is like cutting off your foot to fix a bunion. The whole subject is sort of confusing, so ask away. We're all here to help you. Take care, Elaine

See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

In a message dated 4/5/2002 11:13:19 AM Eastern Standard Time, daisyelaine@... writes:

Destroying your thyroid is like cutting off your foot to fix a bunion.

Hehehe! Good one! I have another suggestion for this board, that we no longer call RAI a "treatment," as it treats nothing, and makes everyone sicker than before. I can't believe the doctors are still pushing this--they are so ignorant! I am SO GLAD I did not even consider this option.

AntJoan

[Guest guest]

Hi Marie

I was in a rush to 'get better' and took the RAI treatment. I

have never felt well since and just continue being incapacitated.

It seems that every time I turn around one doctor or another has come up

with yet another chronic illness. Do please think carefully.

If I had it to do over again, I would have tried the drugs and supplements.

My error was listening and believing my doctors (2) who recommended the

RAI. Both said I probably would not go into remission on the drugs

so I just dived in. Now I have fibromyalgia, a heart condition, anxiety,

depression, Graves eye disease, osteoporosis, etc. None of these

was present before the radiation. I live each day wondering if I'll

start down another road with yet another autoimmune disease. The

city where I live has extremely high diabetes incidence and there are studies

going on right now trying to find out why. Needless to say I figure

that will be next.

Try to keep your stress levels down as low as possible. I cannot

emphasise that enough. For the rest of your life! Learn to

say no sometimes and learn to look after yourself well.

If you do decide to have the treatment make sure you have good accessability

to your doctor. Shortly after taking the RAI, my body went kinda

'wild' , as did my emotions, and I had an awful time of it. Extreme

hormone changes can do that to you. My endo was 'out of town' and

my family doctor had no idea what was wrong, didn't respond to my phone

calls, and didn't know what to do. I ended up in Emerg a couple of

times, and had a thoroughly unpleasant time of it. The RAI pill itself

is no big deal. The triple toilet flushes etc that they

will tell you to do are easy also. They will instruct you well.

The keeping away from my family for a few days I found to be difficult.

Think carefully and make the best decision for you. It's your

body and your decision.

craftypandaus wrote:

My name is Marie and I was just diganose with hyperthyroid

and Graves

Disease ( which he didn't tell me on my visit). I am taking my RAI

on

Tuesday and have alot of concerns.I been doing some research on the

web for the past couple of days. How

safe is this treatment. My encro. said this is the safest of all the

options. Which he didn't even mention surgery. He just told me on

some side effects. Do I have to take percautions? I readed that you

should stay away from people for 48 to 72 hrs. Reading all the web

site got me so confuse, I don't know what to think about this

treatment.

Marie

Confuse about treatment

[Guest guest]

Marie - you can cancel if and when you walk in to take the medicine.

You control what you do at all times. It's your body and your decision.

K

craftypanda@... wrote:

Thank you Pam. You were helpfull. You sound just

like my Aunt (retired

teaching nurse) who I called has soon I got home from the encro. I

am trying

to find a new dr. since I really don't care for this one.But

it seem they

all don't have openings for a couple of months. I just ask my

husband and he

even said that the enco didn't even mention that it could cost

worsening of

the eyes or even can cause cancer. I am going to check out the links.

I'm

trying to find out all the information I can before Monday at 12. I

have up

to that time to cancel the RAI.

Marie

[Guest guest]

Thanks everyone for your input. I'm going to a new endo first thing Monday

morning.. My Aunt called me to tell me she pulled some strings and got me

with a dr that all the nurses go to. So this one should be real good. At

least I will have a second opinion by the time I have to cancel the

treatment. I also made an appointment to get my eyes check just to be on the

safe side.

Marie

[Guest guest]

Whoo hoo Marie !

Guess what I said about this board being quiet turned out to be wrong.

Look how many gals you woke up, and this is still before breakfast !

You are absolutely right about the very real possibility of cancer. Radiation

mutates

cells, and how in the world it could possibly only affect the thyroid because of

the

iodine, is just beyond reason. Sure, the majority will go there, but it is

RADIATION !

Think of the route it will have to take while it goes through your body.

Some day they will look back on this 'treatment' like we now look back on blood

letting

and leaches. They will wonder how doctors ever thought this was a good idea.

I had the eye disease and let me tell you, it is more that just a facial

disfigurement, it

blurs and doubles your vision, and hurts like hell... every single minute of the

day and

night.

My eye disease came because I was not diagnosed in a timely manner, and was very

sick by

the time I started my anti thyroid drugs. Fortunately for me, because I chose

the drugs,

my eyes have gone back in my head, my vision is back, and the pain is gone.

Graves is an auto immune disease. NOT a thyroid disease ! We have a very healthy

thyroid

that is being over stimulated by antibodies, so it puts out too much thyroid

hormone.

Killing the thyroid will certainly stop that, but then you still have those darn

antibodies in there. Thus the increased risk of more auto immune diseases

popping up. Just

having one auto immune disease puts us at greater risk of developing another, so

your risk

certainly would be increased with the way RAI works.

The drugs work by blocking iodine absorbstion, and giving your thyroid less

fuel, and also

by reducing the number of antibodies. Which is how my eyes got better.

Does this make sense ?

There is so much to learn right at first, is wonderful that you are here.

Being hyper also affects your brain and so all this is much harder to understand

right

now. If you choose to start on the drugs, your mind will clear, and it will be

easier to

figure all this out. Even if you were to decide to take the RAI, it would be

smarter too

try the drugs first, and get your brain back first, so you have time to study

all of this.

One you do the RAI it is forever.

-Pam- who is so glad to see you back here first thing this morning :-)

And does not want to ever hear, " My life was ruined because I could not get a

doctors

app. fast enough " .

[Guest guest]

Hi Elaine - this is quite the learning process. My Internist put

me on anti-thyroid drugs and beta blockers while waiting for my appointment

with the Endo. Where I live the RAI had to be done by an Endo in

another town. When I saw the Endo she was upset that I had been put

on anti-thyroid meds at all and took me off them immediatley. Then

I had to wait 2 weeks for them to clear my body. I guess I have a

better take today on why I went through such Hell when I took the RAI.

And that wasn't even all that long ago - Mar of 2000.

I guess my message is that we have to look after ourselves and be on

top of the situation at all times. This is so difficult to do when

we are feeling so ill.

Good luck,

Kate

daisyelaine@... wrote:

Hi

Marie,

There really is no rush

to have treatment, especially aggressive treatment, so soon. Your doc can

give you beta blockers to reduce your cardiac symptoms. And today most

doctors first bring your thyroid hormone levels down with anti-thyroid

drugs before even considering doing RAI since it temporarily worsens symptoms.

I can't imagine why your doctor said RAI was the safest option. It is,

though, the cheapest option and that makes insurance companies happy.

[Guest guest]

Kate,

To the untrained eye, it seems you are saying the drugs are the reason you had a

bad

experience with RAI. I am sure this is not exactly what you meant.

By my suggestion to Marie to try the drugs first, what I meant was at least 6

mo. to a

year on the drugs, not the horrible ordeal they put you through. Yes, putting

you through

the wringer with all that fast up and down was terrible, and should never have

been done.

-Pam- just wanting to be sure we are clear for Marie

[Guest guest]

Pam you are quite right. The drugs did not give me the problem at

all. The Endo did by withdrawing them suddenly and leaving me 'hung

out to dry', waiting for the RAI. The drugs were beginning to be

helpful by the time I saw the Endo.

So please, Marie, don't misunderstand what I was saying. Just

be sure in your own mind what you want and why.

Kate

P.S. Thanks Pam

K

Pam wrote:

Kate,

To the untrained eye, it seems you are saying the drugs are the reason

you had a bad

experience with RAI. I am sure this is not exactly what you meant.

By my suggestion to Marie to try the drugs first, what I meant was at

least 6 mo. to a

year on the drugs, not the horrible ordeal they put you through. Yes,

putting you through

the wringer with all that fast up and down was terrible, and should

never have been done.

-Pam- just wanting to be sure we are clear for Marie

[Guest guest]

Kate, :-)

" I " knew exactly what you meant, but then we know each other.

But I am VERY glad to see you took my comment in the spirit in which it was

intended. In

fact, I waited to hear from you. So now I shall head out to work.

I remember how confused I was back in the beginning, and sometimes people just

had to

spell things out REAL simple, and repeat, and repeat... LOLL = :-o

-Pam-

[Guest guest]

Have a great day. Funny how it goes - we think we write so clearly

until someone else reads it.

Kate

Pam wrote:

Kate, :-)

" I " knew exactly what you meant, but then we know each other.

But I am VERY glad to see you took my comment in the spirit in which

it was intended. In

fact, I waited to hear from you. So now I shall head out to work.

I remember how confused I was back in the beginning, and sometimes people

just had to

spell things out REAL simple, and repeat, and repeat... LOLL = :-o

-Pam-

[Guest guest]

Dear Marie: Even really good endos have been known to recommend RAI as the

treatment of choice. My endo teaches at a leading university, and he has an

excellent reputation in the medical community. He is also a strong advocate

of RAI, which I have refused. I am on PTU and I feel great.

I glad you have an appointment with a highly recommended endo on

Monday; this is definitely a disease that needs to be treated, and the sooner

the better. Just don't be rushed into RAI; read all you can about this

disease and the treatment options, and don't be shy about asking lots of

questions.

Good luck and keep us posted on how you're doing.

Joyce

[Guest guest]

Hi Marie,

I got information on both RAI and surgery and the 2nd option does seem to be better! I was told that there would be a risk with RAI that it could stop the ovaries working properly meaning that i wudnt be able to have children. Seeing as im only 18 i dont really want that to happen right now!!!

JuliA

[Guest guest]

Hi ,

You said, I got information on both RAI and surgery and the 2nd option does seem to be better! I say, better than what? Destroying all or part of your thyroid gland is something you will have to live with for life, not to mention all the problems, pills, and deficiencies that will become part of daily living. At least 6 docs - endos and PCPs told me my only hope was surgery or RAI. I refused and within about 4 months or so I was off all anti-thyroid medicine with normal bloodwork. Please be careful...Both of you. 18 is so young to have to make such a final decision. By taking ATD medication you give yourself time and a chance to get well with your thyroid intact. My best to both of you and good luck! Zoey

Re: new member here

Hi Marie,

I got information on both RAI and surgery and the 2nd option does seem to be better! I was told that there would be a risk with RAI that it could stop the ovaries working properly meaning that i wudnt be able to have children. Seeing as im only 18 i dont really want that to happen right now!!!

JuliA

[Guest guest]

In a message dated 4/8/2002 1:20:56 AM Central Daylight Time, tarbi@... writes:

I refused and within about 4 months or so I was off all anti-thyroid medicine with normal bloodwork.

Hi Zoey,

I am curious how you got your bloodwork in normal range so quickly? What treatment's were you using?

Thanks,

Jane

[Guest guest]

Hey Zoey,

Well i havent heard anything about all this alternative stuff. ive had this

since i was 13 and its crapped everything up so im pretty much sick of it

all. i know there are risks and everything, i know that theres a large

chance i will have an underactive thyroid for the rest of my life, but id

rather just simply take tablets for that and maybe calcium definciency stuff

but then i know it would all be over! if i tried all this suppliment/change

what u put in ur body stuff, there would always be that worry that it'd all

go haywire again, its done that 3 times now!!! i can't cope with trying to

get through A Levels and university and trying to keep my thyroid normal at

the same time. i want it to be over no matter what the little consequences

might be. I just trust in God to be honest, and this body isnt the one im

gunna have forever anyway!

----Original Message Follows----

From: " Zoey " <tarbi@...>

Reply-hyperthyroidism

<hyperthyroidism >

Subject: Re: new member here

Date: Sun, 7 Apr 2002 23:26:40 -0700

Hi ,

You said, I got information on both RAI and surgery and the 2nd option does

seem to be better! I say, better than what? Destroying all or part of your

thyroid gland is something you will have to live with for life, not to

mention all the problems, pills, and deficiencies that will become part of

daily living. At least 6 docs - endos and PCPs told me my only hope was

surgery or RAI. I refused and within about 4 months or so I was off all

anti-thyroid medicine with normal bloodwork. Please be careful...Both of

you. 18 is so young to have to make such a final decision. By taking ATD

medication you give yourself time and a chance to get well with your thyroid

intact. My best to both of you and good luck! Zoey

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

In a message dated 4/8/2002 5:50:00 AM Eastern Daylight Time, whogivesacow@... writes:

rather just simply take tablets for that and maybe calcium definciency stuff but then i know it would all be over!

Dear ,

It would NOT BE ALL OVER! Surgery or RAI do not address the problem, which is autoimmune, but just destroy the thyroid, which is not really the problem at all. Then, you are sick for the rest of your life! I understand your frustration, and I also can understand that the supplements/nutrition thing might seem daunting, but trust me (I've been there)--it's well worth it. I spend about 3-4 months on meds, changed my diet a little and added some supplements and subtracted others, and I've been fine for over 4 years now. My thyroid is back to normal--no meds or anything. I can't stress enough how happy I am that I followed my instincts, and didn't listen to the idiotic doctors with their idiotic "treatments" that treat nothing except their own wallets, by making you so sick that you become a patient for life! That may be their agenda, but it's not mine! PLEASE reconsider--there are so many people who have what you have who feel as I do. Let us know what you decide.

Regards,

AntJoan